Skip to main content

A Race.


Last weekend Ivey, through the eyes, ears, lungs and legs of her brothers, completed another R.A.C.E Rome triathlon, this one to benefit the Open Door Home.  

Am I proud of them?  Absolutely.  

I am proud that Ivey has found a stable spot in her life.  That spot is something deep inside her.   

As for the boys, I am proud of their hard work and finishing each race - for their own perseverence.  Ivey is merely the cherry on top.  

As a spectator, it is interesting to hear different comments as the three of them move through the race.  
Yes, they are amazing.  But to me they are amazing because they are my babies.  

BUT.  The boys pulling Ivey through the race, for me, not so amazing.  

They do with her because they love her and they know no other way.  

Literally, they don't know or remember a life without her.  

A "typical" life I know.  Matt knows.  As for the boys - this is it.  
There are no memories of any other way or choice, no before.  For them it is - always and forever.  

They, just like every other aspect of their life, race differently.  They race the way kids do when their sibling requires -  different.  

During the races, the spectators are reminded of the value of "normalcy".  The value of our "typical"  abilities become more valuable.  

I am proud of the sportsmanship.  I am proud of our community.  I am proud of the school that hosts this race.  And I am proud to be their mom.  



  


Comments

Cara Lord said…
Hi! I crossed paths with you a few years ago at deaf blind conference. I also have a son with special needs. You were one of the only other parents there and your story about Ivey stuck. For whatever reason you all crossed my mind tonight and I was so happy to find your blog. Her story continues to be amazing!!! You are an amazing mom and I love how your supportive your family is! I understand very well how day to day life with a special needs child can be challenging.. Sending prayers your way! Your family and Ivey are an inspiration, thank you for sharing her life story :)

Sincerely,
Cara Lord

Popular posts from this blog

BEAUTIFUL GREEN EYES........

Submitting to Lack of Control

When Ivey was a baby, I literally had drawers and spaces in her closet labeled, everything had a space, a place.  One special friend loved showing off Ivey's closet to newbies coming by for a visit. This level of organization mystified my friend. Secretly, I wanted to go back to haphazardness.  Justifying why I did this is simple.  At the time, I had friends helping me with my laundry, as were my mom and some night nurses.  With so many people, I found it more efficient, for all of us, to label everything.  No one had to search or guess where things belonged.   This approach to find order has only amplified with time. I have come to accept that being Ivey's mom has brought out a controlling aspect in my personality. For the record, I have always found peace in order and organization.  It could be described as controlling, maybe.  Ivey ramped up my need for order. On her hard days, or in times leading up to what I know will be hard, my need for order raises it’s merciless head. 

Ivey Elizabeth Sirmans

Ivey Elizabeth Sirmans was born Tuesday April, 25th at 5:26 a.m. She weighed 5 lbs 11 oz and is 17 inches long. She has beautiful long fingers and toes like Gwen, and her hair is dark like Matt's. She loves to be touched and is happiest when she is being held. Ivey is a strong little one who is breathing on her own. Her strength is a blessing as she will face some challenges in the future. The initial genetic testing showed Ivey has a partial deletion of chromosome 21. There are many tests pending, and as we find out more, we will let everyone know those results. She has a double cleft palate and a cleft lip which will require surgery at some point in the future. She is blind. She has had one hearing test which will be repeated due to the noisy NICU. The aortic valve in her heart has 2 leaflets instead of 3, but despite this, her heart is working wonderfully. Currently, she has a feeding tube in her nose, and she is learning how to nurse from a bottle. Once her feeding is successfu